OpenNotes: How the Power of Knowing Can Change Health Care

The OpenNotes initiative began in 2010 as a year-long demonstration project, with 105 primary care physicians at three diverse U.S. health care centers inviting 20,000 patients to read visit notes online through patient portals. Findings from the study suggest that shared notes may improve communication, safety, and patient-doctor relationships, and may help patients become more actively involved with their health and health care. At the study’s conclusion, 99% of patients surveyed said they would like to continue using OpenNotes, and not a single doctor turned off their patients’ access to notes — a highly promising outcome for an intervention designed to increase patient engagement.

Today, more than 11 million patients in the United States have easy access to their notes through what has become a standard-of-care “movement.” Relatively simple and scalable, OpenNotes is sending a powerful message about how organizational transparency and inclusivity can empower patients and doctors and potentially improve the delivery of care.

Rarely does a fundamental paradigm shift in practice occur without challenges and surprises, and so we share here key lessons learned in six years of OpenNotes and look ahead to how it may continue to change the health care landscape.

1. The Power of the Written Word

Every day, clinicians and patients have important conversations about health issues, but patients often forget what was said in the charged atmosphere of the office encounter. Among the patients in the OpenNotes trial who reviewed their notes, roughly 75% reported better recall of care plans, better self-care, a clearer understanding of their conditions, and feeling more in control of their health care. Additionally, about two-thirds of patients taking medications reported improved adherence to their regimens.

Relatively simple and scalable, OpenNotes is sending a powerful message about how organizational transparency and inclusivity can empower patients and doctors and potentially improve the delivery of care.”

These findings also have important implications for shared decision-making and for informed consent. Patients may be more prepared to participate in decision-making once fortified with a deeper understanding of their health conditions and treatment options. Moreover, some doctors believed that patients could be better prepared for the consent process by reading notes. Both patients and doctors have also told us that seeing a health issue “in writing” appeared to increase personal accountability and motivate behavioral change, such as addressing weight loss or overcoming denial about substance abuse. Some patients even regarded notes as a “report card” of progress and next steps.

Evidence suggests that OpenNotes may enhance the patient-doctor relationship and generate greater trust and satisfaction. It may also act as a “visit extender,” allowing patients to see firsthand the provider’s thought process, often with relational benefits: “He really listened”; “I respect, trust, and appreciate her even more.” Even after reading only one note, 99% of patients felt better or the same about their doctor, with particular benefits for traditionally underserved populations.

2. Improved Patient Safety through Patient Feedback

Research shows that patients and their families can identify errors, including those not apparent to clinicians. In the OpenNotes trial, about one in three patients who reported contacting the doctor’s office did so to note a possible mistake. Patients who read notes and are familiar with “how the doctor thinks” could also help keep diagnostic processes on track between visits. With access to notes, care partners of chronically ill patients could help avert potentially complex and costly problems, including poor medical adherence, inaccurate medication lists, and preventable hospital readmissions. Doctors have also acknowledged the benefits, with one participant noting, “I felt like my care was safer, as I knew the patients would be able to update me if I didn’t get it right.”

In support of such benefits, we partnered with the Patient and Family Advisory Council at our medical center to develop an OpenNotes patient reporting tool — to our knowledge, the first in the country designed to solicit feedback on notes. Available to more than 30,000 users at two health care organizations, this mechanism has helped patients and family members identify medication errors and inaccurate problem lists and close loopholes in diagnostic accuracy.

3. OpenNotes Is for Everyone

OpenNotes is challenging assumptions regarding user populations. Contrary to predictions that the intervention would cater primarily to tech-savvy patients, interest appears widespread (about 80% of patients in the OpenNotes trial read at least one note). Still, many Americans do not use a patient portal, and further outreach is needed. Broad portal registration of vulnerable populations remains particularly challenging but may be fruitful, as patients who are non-Caucasian, less educated, and have lower self-reported health appear at least as likely as other patients to anticipate benefits from OpenNotes.

I felt like my care was safer, as I knew the patients would be able to update me if I didn’t get it right.”

Ensuring notes access may be especially important for care partners. Stressed by the burden of caring for frail or chronically ill patients, they often feel “disconnected” and unsure about that care. Enabling them to read notes could potentially ease such stress and close important gaps in care.

Despite these potential benefits, digital divides persist. The research agenda is broad and includes assessing the unique challenges and opportunities that OpenNotes represents for non-Caucasians, the chronically ill, the elderly, individuals with limited economic resources, patients with mental illness, those whose first language is not English, and other vulnerable groups. Straightforward solutions, seen in pilot programs in New York and Seattle, include sharing hard-copy notes or having patients log on to portals via public libraries. Linking OpenNotes to health navigator projects may also help empower patients and families with their health data.

4. With Planning, Implementation Can Be a “Non-Event”

Although some organizations can activate OpenNotes by “flipping a switch,” our experience is that ready access to notes is often a fundamental change requiring thoughtful deployment. Organizations should review their policies in light of changing needs resulting from OpenNotes adoption. Clinicians may benefit from education and support to deal with sensitive note content, privacy issues for adolescents, proxy access to notes, documentation of mental health visits, and potential disagreements with patients. Such resources can help tremendously with clinician buy-in, especially at a time when burnout is high and support is low.

Among the patients in the OpenNotes trial who reviewed their notes, roughly 75% reported better recall of care plans, better self-care, a clearer understanding of their conditions, and feeling more in control of their health care.”

For patients, the availability of visit notes should be announced and reminders sent when new notes are available, so as to optimize reading rates (and thereby patient engagement benefits). The downloadable OpenNotes Toolkit contains videos, FAQs, slide decks, policy recommendations, and other materials adaptable to local culture. But such resources must be accompanied by frank and open conversations and strong supportive leadership.

As for embracing the open notes concept itself, although some clinicians may initially resist OpenNotes, implementation experiences in more than 70 widely varied sites have been remarkably consistent, with many clinicians and administrators calling it a “non-event.” At our center, portal e-mail volume did not change, and doctors heard infrequently from patients. And we have seen skeptics become proponents, including doctors who declined participation in the initial study and now advocate for both OpenNotes and patient feedback on notes.

5. The Business Case for OpenNotes

The spread of OpenNotes has been driven primarily by the opportunity for enhanced patient engagement and by the moral imperative that it is “the right thing to do.” But there are other benefits to consider. First, some organizational leaders credit the availability of OpenNotes for a rise in portal registration, and they note that portal users tend to be loyal to their health care center. Second, although rigorous economic analyses are not yet available, improved medication adherence, error prevention, enhanced patient trust and satisfaction, and a safety net for care partners of vulnerable patients likely translate into bottom-line value. Third, a consumer movement appears afoot, with patients learning to ask for OpenNotes and 85% of patients who have “tasted” OpenNotes stating that access would influence provider and health care system choices. Championing transparency and taking a clear stand on the importance of patient partnership and inclusivity can give organizations a competitive advantage in the health care marketplace.

The Open Road Ahead

As we aspire to make OpenNotes a universal standard of care, what educational and patient engagement innovations will be needed in the future? Adapting to the “new language of health” in a shared record will require strong patient and clinician education and support. Setting expectations about a culture of transparency and establishing clear patient and clinician roles will be essential in transitioning from a historically “closed” record to a prospectively open one.

How will notes change?

Many clinicians worry about how to write open notes about domestic violence, substance abuse, and other sensitive topics. However, virtually all patients have long had a legal right to their records through HIPAA, and clinicians have historically struggled with such documentation. OpenNotes does not change this reality; it just makes it more acute. Moreover, the good news is that sharing notes may open up new opportunities.

Setting expectations about a culture of transparency and establishing clear patient and clinician roles will be essential in transitioning from a historically ‘closed’ record to a prospectively open one.”

Second, notes could be written in a way that preserves a patient’s story. Obscured by templates in electronic health records (EHRs), unique social, familial, cultural, and medical determinants of a patient’s health can often disappear. Doctors lament laborious documentation requirements, and “fixing” the EHR will necessitate larger-scale policy attention. But as doctors learn to write open notes, small adjustments could make notes and care more meaningful to both clinicians and patients. Unintentionally demeaning, disrespectful, or dehumanizing language may be replaced over time with thoughtful, descriptive, or empowering language focused on partnership and healing. Mindful documentation may even positively influence organizational culture and how we think and talk about patients.

Third, how clinicians write their notes could conceivably reshape approaches to care. For example, by describing patients’ strengths as well as problems, some psychiatrists and therapists forecast that the visit note in itself will become an important part of treatment. Pilot studies in this area are under way.

Empowerment through innovations in care delivery

We envision a future “OurNotes,” in which providers and patients cogenerate notes. Within this framework, the care plan may become a shared document and perhaps a patient-specific quality metric. We anticipate that coauthoring notes will ease provider workloads and empower patients as change agents in their own care. Moreover, well-designed incentives may motivate doctors to share notes and patients to read them, with an emphasis on improved outcomes. With EHR interoperability still a vexing problem, patients using OpenNotes could serve as prime owners of the record and, through thoughtful app development, share information safely and more comprehensively with their clinicians.

Borrowing the Kahn model, what would the ‘flipped clinic’ look like if patients could read information at home and be freed up for nuanced discussions and decision-making in person with providers?”

OpenNotes could also change how time is spent during the office visit. Borrowing the Kahn model, what would the “flipped clinic” look like if patients could read information at home and be freed up for nuanced discussions and decision-making in person with providers? The OpenNotes reporting tool can play an important post-visit role, particularly in areas susceptible to communication breakdowns, such as diagnostic accuracy, chronic illness, oncology, and medical uncertainty. Health care can be strengthened by dialogue that better reflects, integrates, and confirms patient and family values. The reporting tool can also be adapted to provide trainees with patient and family feedback, making it a valuable educational resource.

The benefits of OpenNotes will not be limited to ambulatory care. Minnesota doctors are sharing notes on hospital wards and intensive care units (ICUs). OpenNotes may allow patients to reconstruct memories following a critical illness or an ICU stay, support patients and families during a stressful time (when memory may be further impaired), and improve the efficiency of communication among multiple providers and family members.

Building open communities

Finally, OpenNotes may help move health care conversations deeper into the community. As policy leaders advocate a “culture of health” and researchers delve further into issues associated with vulnerable populations, transparency may help catalyze knowledge, empowerment, and healthy choices. Patient navigators, case managers, visiting nurses, and other professionals may use shared notes to improve coordination of care and patient education. Patient and Family Advisory Councils could “coach” patients new to portals and visit notes (this is happening already). Adults and children may learn to ask their doctors questions, air concerns, share ownership of their health, and become members of healthy, empowered communities.

OpenNotes demonstrates how a simple intervention can have an enormous impact, even absent advanced technology. “Up front” it costs virtually nothing, basically requiring only a decision for record transparency. As evidence of the benefits of OpenNotes grows and consumers increasingly weigh their health care options, we anticipate that organizations will find themselves asking, “Why aren’t we sharing notes?”

Acknowledgments: The authors thank Macda Gerard for her assistance with this manuscript. They also thank the Robert Wood Johnson Foundation, the Gordon and Betty Moore Foundation, the Peterson Center on Healthcare, the Cambia Health Foundation, CRICO/Risk Management Foundation of the Harvard Medical Institutions, and the Commonwealth Fund of New York for their generous support and funding of OpenNotes. Disclosure: Tom Delbanco owns stock in Eliza Corporation.

This article originally appeared in NEJM Catalyst on October 27, 2016.

Co-Founder, OpenNotes; Member of the Research Faculty and Assistant Professor of Medicine, Division of General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Harvard Medical School

Discuss

Jeffrey Forman

I support the OpenNote concept and provide my note to my patients when they leave my office. One of the challenges is how to deal with the patient who wants a note changed because he/she disagrees with what the provider said and the provider feels such information should be included in the note. This is an infrequent occurrence but it will happen. A common example is when a provider expresses in his/her note a concern about substance abuse. Such information would be important for future visits with this patient and for others caring for this patient.

November 04, 2016 at 7:09 am

physician recruiter San Antonio

I also believe that OpenNotes has a highly promising outcome for an intervention designed to increase patient engagement. It can certainly effect changes in the health care landscape.

To ensure that we engage the patient groups who have much to gain from the more flexible health care interactions that digital innovation can provide, we must consider issues of computer literacy, access, and trust.